Patients With Cancer Speak Up About the Types of Independence They Lost Because of Their Disease

Recent studies have shown that cancer-related pain is associated with poor employment and financial outcomes in survivors.

Moreover, some cancer survivors have shared how their fear of cancer recurrence has a hold on their lives, so much so that it feels like they have to actively “declare independence” from their cancer.

Debbie Legault, a caregiver to her daughted who had breast cancer, writes that certain triggers bring her daughter to her knees and her emotional independence goes out the window.

To learn more about how cancer-related pain and long-term side effects affects a patient’s independence, CURE® surveyed its audience on social media. 

In our weekly #CureConnect question, we asked, “Has cancer-related pain or side effects from cancer treatment affected your or your loved ones' sense of independence? If so, how?”

When Pain Prevents Mobility

“The radiation-related effects on my rib and chest wall, as well as my hip, have induced significant fibrosis restricting my movement and a source of constant pain. My activity levels are reduced due to tight/fibrotic tissue and due to pain. It impedes my ability to do some housework (and causes me to) move around more slowly. (It) takes me much longer to accomplish everything.” - Carolyn Leigh, a patient living with metastatic breast cancer.

“I have no energy from immunotherapy. I have so many different side effects, every three weeks there's something new. It's very hard. I'm up for a few hours, then down. (I can) hardly make it up the stairs at night.” - Becky Jahns

“I’ve been on two different aromatase inhibitors because of joint pain. (When I was on) my first (aromatase inhibitor), my joint pain was really bad. My new one is bearable. I also deal with a lot of tightness from radiation.” – Tracee Cole, a patient with stage 2 triple-positive breast cancer.

“Neuropathy (and) bone (and) joint pain was constant! Walking up and down the stairs in my home was unbearable. There were days I would just sleep on the couch because it was physically painful to walk upstairs. I used my knuckles on my phone because my fingers would go numb typing text messages. I had to get earbuds because my hands (went) numb (while) holding the cell phone.

For four years post-active treatment, I could only wear sneakers or step-in style shoes. I wore wedges once to a dinner party and suffered the rest of the night. It took almost 30 minutes for the pain to subside long enough for me to walk. The tightness on my left side from mastectomy and lymph nodes (that were) removed was ridiculous. The extreme limitation to the range of motion and the pain of physical therapy left me in tears. I still get random spells of sharp pain in my feet, left arm pit, and at the implant site.”- Tresha Barrett, a patient with stage 3 breast cancer.

Driving and Decision Making

“It definitely took away independence during treatment. The practical independence is back but triggers can still drop her to her knees and emotional independence goes out the window. Lymphedema means solo road trips are out. There is also the second-guessing decisions from the fog”- Debbie Legault, a breast cancer caregiver and CURE® contributor.

Learn more about Legault’s experiences caring for her daughter, who was diagnosed with breast cancer at 27, by reading her blogs.

“I don’t feel safe driving anymore. (I get) short of breath (and experience) numbness in (my) feet!”- Kim Shelhamer, a patient with ovarian cancer.

“Housekeeping is out the door. I am a little bit timid about long-distance driving due to pain and a sense of being on the road alone. My pain and mobility issues are largely due to cancer, the side effects, and the treatment, however, my spirit is greater!”- Sasha Bialock, a patient with stage 3 ovarian cancer.

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